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What It’s Like Being a Childhood Cancer Survivor

August 4, 2016

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Angela Lee

Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Angela Lee has been an IT professional, a certified personal trainer, and a fitness competitor. She now works in the insurance industry. As a childhood cancer survivor, she spends much of her spare time as a volunteer legislative advocate for the American Cancer Society and volunteers for Circle of Cancer Care, an organization that provides a variety of services to women during their cancer journeys. She is also a member of the Coalition Against Childhood Cancer (CAC2).

My advocacy story

I remember “that day” like it was yesterday. It was a beautiful spring day in Virginia. The sun was shining on my mom and me as we sat quietly in a hospital room, waiting for an oncologist to come in. I was admitted just days before for a series of lab work and tests that had left me feeling like a science project. On that day, I heard, “It’s a form of cancer.” And I asked, “Am I going to die?”

It was 1984, I was just 13 years old, and I was diagnosed with stage II Hodgkin lymphoma. The silver lining to that dark cloud was my oncologist’s response to my question. He swiftly and confidently said, “No.” That’s all my spirit needed to hear.

I can’t even imagine what my parents went through emotionally or financially. The example they set as parents and the sacrifices they must have made still fills me with an overwhelming sense of gratitude. But today, at 45 years old, I’ve also had to learn to take care of myself. That endeavor alone has been unusual because of the almost 50 radiation treatments I have received. Since there weren’t any post-treatment or survivor resources available back then, I had to become my own patient advocate. For me, it’s really been a journey about learning how to create a constructive partnership with a doctor. By my own will and diligence, I have learned to help my health care team treat me holistically and not only according to their individual areas of expertise. I believe that any long-term survivor who was diagnosed before the age of the internet has faced similar challenges. We need to be proactive and not passive or reactive to what happens in our care. That is the new normal in maintaining our well-being!

But in addition to my own personal patient advocacy efforts, I found a greater purpose when I was asked to be an Ambassador Volunteer for my congressional district for the American Cancer Society’s Cancer Action Network. In the past 5 years, I’ve met with legislators at the local, state, and national levels, including in my immediate city, Austin, Texas, and Capitol Hill in Washington, D.C.! Other doors have opened for more advocacy opportunities. Collectively, those “jobs” have become my most cherished accomplishments. My advocacy has focused on many issues, including palliative care, palliative care education, increased funding (both for the National Cancer Institute and specifically for pediatric cancer), setting age limits for tanning beds, and statewide smoke-free initiatives. When you find yourself sitting in a senator’s office sharing your story and discussing national priorities and then you begin to see change happen, it’s deeply rewarding.

Things to consider if you’re 10 years cancer-free

Do your homework. It’s often not enough to go from “cancer” to “cured” and see a primary care physician (PCP) once a year. Find out if you need to see additional specialists or if you need to think about making certain lifestyle changes. I’m not saying you should become a hypochondriac, but your body has been compromised by cancer. Even if you have an “excellent prognosis,” you need to be mindful that you could be affected in ways that may not show up in your first years of survivorship. There are also organizations that are developing “shared-care models” that help people create survivorship care plans and transition from an oncologist to a PCP.

Get involved. I’ll be the first to admit that long-term survivors often feel alienated. It took me years before I got involved in legislative advocacy. I had cancer at 13 and was cured at 18. Who wants to stay stuck on cancer?! I had to have some fun for a change. However, the long-term consequences of my cancer treatment started popping up when I was a young adult, so I had to realize that although cancer did not define me, it still was a defining moment in my life and will always be a part of me. For me, getting involved means raising awareness about state and national cancer priorities and really making an impact towards finding a cure. I believe that my voice is a tool for those who weren’t cured, and it’s the best tool I have!

Share. Last but not least, do as I say and not as I did. Share your story. Not only did it take years for me to get involved, it took years for me to share my story. It made me vulnerable, too uncomfortable. Most people didn’t relate to my story, and I assumed as someone who was a young survivor, “Who would want to hear about my pain?” Teenagers are supposed to think they are invincible. I know now that sharing is truly caring. Embrace your story and share it—you may never know what connection may come of it or whose life it may impact. Just go out there and make a difference with it!